Being the mom of a child with special needs requires a unique strength. Special needs moms have a different way of viewing the world. But there is something that makes them just like any other parent; they want to be loved, accepted, and supported. They want their child to be loved, accepted, and supported – viewed through the lens of their strengths, not their deficits.
Isn’t that what we all want?
Below is a series of questions I asked three different local mamas; Erin, Melanie, and June. All three have children with special needs. The needs are so different, just as each diagnosis is so different.
What is your child’s diagnosis?
Erin: Severe Speech Delay, Global Developmental Delay, Autism Spectrum Disorder.
Melanie: PIK3CA, CLOVES, and M-CM.
June: Down Syndrome, Hirshsprungs Disease, Congenital Heart Defects, Celiac Disease, and Sleep Apnea.
What was your reaction to your child’s diagnosis?
Erin: Uncertainty, mostly for what the future would look like.
Melanie: Somewhat prepared because of research I had done from symptoms presented at birth.
June: Fear and relief. Fear of what she would face. Fear of not being accepted. Relief to some things because it explained some things. Sadness because she deserved a break.
What kinds of therapies have you had to do to help your child thrive?
Erin: Speech, OT, ABA, Water Therapy.
Melanie: OT, Speech, Hippotherapy, Lymphadema Massage and Wrapping.
June: Speech, OT, Physical Therapy.
What is the most difficult part of raising a special needs child?
Erin: Lowering expectations for your child and community, realizing how little effort people will put forth into communicating with your child.
Melanie: Not having experts that understand her medical diagnosis because it’s so rare.
June: The ignorance and lack of acceptant within our world. The hateful comments really bother me.
What is the most fulfilling?
Erin: Watching him exceed other people’s expectations.
Melanie: Watching her meet milestones we thought she would never meet.
June: Watching my beautiful daughter shattering the world’s limits and thriving.
Erin: I pay more attention to nonverbal communication. Body language and facial expressions can tell you a lot more than words.
Melanie: I’m a lot more patient and have more of an open mind when faced with challenges. I try to be more inclusive of other families with children with special needs.
June: I want to change the world for the better. I’ve learned to be a strong advocate for my child. No one knows my child better than I do and I’ve learned to trust that.
What do you wish others understood more about your child’s diagnosis?
Erin: We encounter misconceptions about the ability to use speech vs cognitive ability. A person can be intelligent, a great problem solver, and also have a communication struggle.
Melanie: It’s not as scary as it seems. She has hindrances, but she’s still a typical five-year-old.
June: Her diagnosis does not define her.
Have you found any local communities that support your child (particular school, church, etc)?
Erin: Not particularly.
Melanie: The Therapy Place has been a major support for our family.
June: The Therapy Place and our church, Shandon Baptist.
Where have you felt the most pushback or exclusions for your child?
Erin: Anywhere someone believes speech is needed for an activity or when someone expects him to answer questions. This is usually a bigger issue with adults than children. In our experience, children aren’t bothered by a lack of words and they accept nonverbal communication with ease. We have found adults have a more difficult time accepting and adapting to a brain or body which functions differently than their own or outside the societal norm.
Melanie: Extracurricular activities and typical functioning schools are not very inclusive for children with disabilities.
June: The public school system.
If you could offer any piece of advice or wisdom to other special needs mommas out there, what would that be?
Erin: Try something new. It sounds simple but you may find yourself in a rut with a therapy schedule that’s not producing results, or a therapist/provider that’s not a good fit. Try something new. Don’t be afraid to try new people or approaches until you find the right fit for your child.
Then, be prepared to accept that the best fit may change and you’ll need to try something new again. It may be that your child “failed” at something other kids can do, but pay close attention to how and why they had trouble. This information is essential to helping your child move forward and it gives the provider team insight about where to focus treatment plans. It’s also okay to try new things if you’ve maxed out your progress on one path. It’s a good problem, it means your child is continuing to develop and you can find new ways to support them.
Melanie: Find a community of parents that are facing similar challenges that you can relate to and have conversations with them regularly.
June: Embrace the diagnosis when you’re ready, but remember your child is just that, your child. Don’t look at your baby as some of the world does. Don’t set limitations on them because of a label they are given. Believe in your child, believe in yourself as their parent, and remember to always always always be their advocate and voice. Our children can and will do incredible things if we don’t let negativity and doubt intrude on our lives. Teach your child they can do and be anything and the label doesn’t define who they are. Remember to have and give grace. To your child and to yourself. Remember your child doesn’t need to change but do everything in your power to change the world FOR THEM.
My hope and prayer is that you will read this and gain perspective, some understanding, and some empathy. More awareness should be raised as to what families that have children with disabilities go through. And I hope for every person that reads this, every effort is made to do it differently. Love all, regardless. Judge not. Be kind. Always, always, always be kind. If you’re a momma out there walking a similar road, I hope this serves as a reminder that you aren’t alone.